'There's strength in numbers'

When a diagnosis of mental illness is made, parents will typically first wrestle with: "Why my child?"

Deborah J. Botti

When a diagnosis of mental illness is made, parents will typically first wrestle with: "Why my child?"

But with an estimate of 1 in 4 people who has some form of mental illness — diagnosed and undiagnosed — says Peggy Spagnola, president of National Alliance on Mental Illness-Alliance for Mental Illness in the County of Orange, the question could almost be "Why not my child?"

NAMI-AMICO, previously known as AMICO, was kindled in the mid-'80s by a small group with family members hospitalized at Middletown Psychiatric Center. One parent, devastated by the diagnosis of schizophrenia, asked hospital staff if there were other parents to talk to. This grass-roots group has since grown to be part of a nationwide network.

NAMI's goals include erasing the stigma, educating, advocating, and finding safe housing for people with mental illness.

"We work with the families, the people with mental illness and the providers," says Spagnola, who is also the coordinator of family support, education and advocacy, adult services, with the Mental Health Association in Orange County Inc. "We go to the politicians, too."

"If more parents would come forward, more could be done," says Lisa Mulligan, a NAMI family advocate and telephone hotline volunteer. "There's strength in numbers. ... But people are embarrassed, they're afraid, because of the stigma."

Diseases of the brain are not regarded in the same manner as diseases of the heart or pancreas or liver. People who suffer from chronic illnesses are not identified by their illnesses; however, people with mental illness tend to be identified by the disease — and shouldn't be, says Spagnola.

"The symptoms of some mental illnesses sometimes look strange," says Spagnola, pointing to, as an example, the homeless man who's talking to himself in response to the voices he's hearing — while flailing his arms.

"But that homeless man would rather live on the streets than go into a shelter and become a victim," says Mulligan.

The recent massacre at Sandy Hook Elementary School in Connecticut further fuels the mass fear directed toward people with mental illness.

It appears clear that Adam Lanza was suffering from mental illness.

"But somebody who is mentally ill is no more likely to commit a crime than somebody who isn't," says Spagnola. "Actually, people with mental illness are more likely to be victims."

"Mind-altering 'recreational' drugs or a single traumatic event can also cause a break in a person who does not have mental illness," says Mulligan.

As can untreated mental illness.

Sometimes denial figures into the equation. The experts say it's not uncommon for a family to be divided over whether a loved one might have a form of mental illness.

"And there are hardly any services for people with mental illness," says Mulligan — especially for adults.

Was that part of the problem the Lanza family faced before the Newtown shooting?

"They can't get the right treatment; they can't find the right doctor; they have to wait for an appointment when they're in a crisis," says Spagnola. "And then if they go to the emergency room, oftentimes the person can 'pull it together' because they don't want to be in the hospital. ... So they're sent home and then 'break' again in the car and take it out on the parents."

Many people with mental illness receive Social Security disability payments and Medicaid for health care, including prescriptions.

If they become employed, however, they'll probably lose their benefits. And more often than not, the job they secure will not have health benefits or a salary that allows them to pay all their expenses, says Spagnola.

"But they want to feel useful," says Mulligan. "They need something constructive to do to occupy their time."

So Mulligan says that many people with mental illness "travel."

"They'd rather hop a bus, sleep in bus stations or the woods, rather than be confined to a room with nothing to do," she says. "And they might commit menial crimes to support this lifestyle."

"There are adults in prison who have committed menial crimes. They're stabilized because they're on their medications," says Spagnola. "When they're released without a good discharge plan, they're not going to make it. The same holds true for a hospitalization. ... They need structure and consistency."

Margaret Mary Ray, the woman who stalked David Letterman, suffered from schizophrenia, as did two of her brothers who died by suicide and possibly her father as well. According to a New York Times article, she lived a cycle of lucidity, delusions, arrest, incarceration for burglary or trespass, hospitalization, stabilization — without follow-up.

"She wrote an apology to her family — and then laid down on the railroad tracks ..." says Mulligan of the death that was reported as "instantaneous."

"It would be great if people would just stop and think about what that person might be going through rather than just react," she said.

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